Sunday, May 20, 2018

Neglected

I promised myself  I was not going to neglect this blog once my medical crisis was over.  I need to make sure I keep up with it.  I need to come up with a writing schedule of some sort.  I'm still trying to get my life back to normal after 5 weeks in the hospital.   It takes a while.  I'm finally feeling more like my normal self; I have more normal energy levels, at least for me.  I have chronic fatigue so normal energy is relative.  The home PT/OT discharges me last Friday so I will start out patient PT on Tuesday.   This means my schedule is going to get a bit busier since I have to fit PT in twice a week.  While working with home PT, I have started walking a little bit again.  I can walk with a quad cane or walker around our kitchen table up to 3 times on a good day.  After that, my right leg, which is my weaker leg, gets very shakey.  Still this is huge considering 1 month ago I couldn't move my legs at all and could just barely move my feet a little.  Still no answers on what is wrong with me or if it will happen again.  I think not knowing if it will happen again is the thing that scares me the most .

I've been trying to clear off my unfinished project shelf in my sewing room.  I have quilts and other half finished projects that I started several years ago but never finished.  Usually someone needed me to sew something urgently so my bigger project got shelved then never picked back up.  The first UFO project I'm starting on is a quilt for Jeremy that is a TARDIS  from Dr. Who.  I've been working on it pretty regularly for the last 2 weeks when time and energy allow and I am almost done.  Weakness in my arms no longer allows me to quilt large projects any longer so I pay someone else to do the actual quilting.  I am hoping it will go to the quilters before the end of the month.  I'll post pictures when it is complete.

Lastly,  I am back on track with losing weight.  I've lost 7 pounds since being out of the hospital.   I am getting really close to my goal weight.  It's less than 30 pounds away now.  I'll know exactly how much tomorrow since I use my weigh in at the office as my official weight.   I feel so much better since losing weight.  I look back at my before pictures and can't even believe I was that heavy.  I never want to be that big again.

Wednesday, May 2, 2018

My Follow-Up with my Neurologist

I want to make sure I keep up with my blog and not neglect it just because I am out of the hospital.  There is still going to be a lot of things going on with my health and my life that I want to journal about.  Maybe people want to read about my life and  maybe not.  Maybe someone will read about my neurological problems and have some clue as to what is happening to me and help me find answers. 

Yesterday I went to my neurologist office and had a nerve conduction study done.  To my surprise, it came back normal.  After my ascending paralysis, I expected it to be abnormal and so did she.  If it had been Guillan-barre or CIDP, the nerves would not have been able to  respond but they responded normally.  The only nerve that didn't was the nerve that  came from my central nervous system down to my feet and back.  They couldn't get any response from that at all.  So I do not have CIDP like the hospital neurologist thought.  My neuro went through the numerous abnormal labs that I had.  Many of them pointed to generic autoimmunity, which we knew I already had.  One of the antibodies can indicate an autoimmune disease called LEMS which I don't have the  symptoms for, but over half of the people with this have small cell lung cancer.  Because of this, I have to have a CT scan of my chest, just to make sure we are not missing anything.  I have no risk factors for small cell lung cancer my doctor doesn't want to take any chances. 

I walked away from the  doctors office rather disappointed.  I think Dr. Westgate was disappointed too that she couldn't figure out what was wrong.  She is sticking with the diagnosis of MS because that fits the best although she admits that I don't really have MS, but some other autoimmune disease that effects the central nervous system.   It can act like MS at times but then also have these episodes of flaccid paralysis (I've had 2 of these) and ascending paralysis, which is the scariest symptom of all.  My doctor can't tell  me if the flaccid paralysis or the ascending paralysis will happen again or not. Over the past week, I have been praying that we will be able to find an answer to what was happening with my body.  Over 10 years ago we went through this limbo process before I found Dr. Westgate.  Then, I had several doctors tell me that my illness was psychological.  No one is telling my that now, but I think that period of time seriously planted some deep fears in me.  I'm so afraid someone is going to tell  me that  my illness is in my head like  they did 10 years ago.  It's obvious it isn't since I don't have reflexes and I  was paralyzed but it has now become a phobia.  I have been praying and reading my scriptures and trying to figure out why I am having to go through this kind of trial.  It's bad enough to have  to go though the trial of the physical illness.  The emotional strain of not having a real diagnosis makes it even worse. Thank goodness all the autoimmune diseases can be treated with IVIG so we will continue my IVIG every 4 weeks.

On a more positive note, I had my 1st weigh in since getting out of the hospital.  I lost 2 pounds since my last weigh in, which was prior to going into the hospital.  It was hard to stay on program in  the hospital.  The menu there was very high in carbs and it  was very difficult to get extra vegetables.  The craziest thing was when I would order my meals, they were always surprised when I didn't want dessert.  You would think hospitals would be an easy place to get healthy food, but really the health care profession doesn't know much about real nutrition past the governments food chart, which is not very healthy.

Friday, April 27, 2018

Finally Home

I actually came home yesterday afternoon, a day earlier than planned.  On Wednesday afternoon, my PT met with my family and we made sure I could get into my van.  While I was sitting in the drivers seat of the van, my therapist made a comment about how easy it would be for me to just drive home.  As we talked more, we decided that I could go home after OT taught my home health nurse how to help me with transfers.  We worked it out with the case manager.  Yesterday, I sprung it on Dr. Latorre.  Usually they don't do therapy on the day you go home and I had a full day of therapy scheduled.  I didn't  see the point of staying there over night just to wait for home  health to be arranged.  I was so happy to be home.

The house wasn't as bad as it could have been.  The kitchen was about what  I had expected.  The boys consider "cleaning the kitchen" to consist of doing the dishes that are in the sink.  The kitchen counters were pretty messy with  trash, crumbs, sticky stuff and general junk that needs to be put away. The fridge had a lot of rotten food in there.  I threw some of it  away immediately.  There is still something in there that smells though.   It took all of  my will power not to go in and clean the kitchen.  I had to do a little bit of clean up this morning before I could make my breakfast but I'm trying to be careful and not over doing things my 1st day out of the hospital

The rest of the house was pretty good.  There were blankets all  over the couch which is pretty normal for us since the cats have scratched up the couch.  The table is cluttered.  Our bed had stuff all  over it but it w as an easy clean.  Our bathroom smelled like cat pee though.  Patches was diagnosed with a  tumor in her throat just a few days before I was admitted. She went down hill quickly and went off somewhere by herself and  passed away, or so we assume because she hasn't been seen for more than a week.  Prior to her disappearance, she was drooling everywhere and it was really smelly according to Stan.  She also kept peeing in she shower, so I'm sure she is the one who peed on the carpet in the bathroom.  Lucky may have done it too to cover up Patches marking.  You can just never tell with  cats.  They never did this in our old house but when we moved into the apartment while our house was being built, we had a problem with the cats doing their business in the showers.  That transferred over to the new house.  We put hinges on the  door to keep the bathroom doors closed.  We thought they had stopped so we let our bathroom door open when I couldn't  walk again just before Christmas.

Next week, everything in my regular life starts up again.  On Monday, I have my pain doctor appointment then in  the afternoon I will  have my home health PT eval.  Tuesday I have to have an EMG as part of the continued work up to figure out this ascending paralysis.  I will also meet with the OT that afternoon.  Wednesday is going to be my crazy day.  I have had an appointment with my urologist in the morning.  Then I have my 1st weigh in since being in the  hospital, then my follow-up with Dr. Westgate.  In between, I need to stop by Quilter's Folly to pick up my new block of the month.  Andrew is going to drive that day so I can preserve energy.  The rest of the week is empty so I can rest.  I didn't want my schedule to be that full so close to my discharge.  I would have preferred to spread those appointments out a bit but I've  had the pain Dr. appointment for over a month, and the urologist for 6 months.  Dr. Westgate wanted to see me the week after I  got out of the hospital.  I'm hoping she can get to the  bottom of this quickly.  The neurologist I saw in the hospital  told me that it was very likely that the ascending paralysis could happen again.  I hope it's easier to get answers this time than when I 1st started having neuro problems.  It took a year to diagnose me with MS.

Monday, April 23, 2018

The end is in sight

It has been a really long couple of weeks.  I was 1st admitted to the hospital on March 24th.  I have been in the hospital for 4 weeks and 3 days now.  1 week prior to this admission, I had spend 24 hours in the hospital with chest pain that  turned out not to be cardiac related but the beginning of an asthma exacerbation.  I am scheduled to go home on Friday.  I can't wait.  5 weeks of  being in the hospital is a really long time.  It's my new hospitalization record.  I hope it stands for a long time.

Over the weekend, it seems like my strength increased a lot.  On Friday I started being able to stand from my wheel chair and then pivoting over to the toilet.  It was pretty challenging at first, but it is pretty easy now.  It seems a little silly that the staff has to supervise me since they just watch to make sure I am ok.  I couldn't really take any steps on Friday on land or in the pool but today I was able to walk about 20 feet both within the  parallel bars and with a walker. 

Tomorrow my PT and  OT will  have a meeting with my rehab doctor to discuss my progress.  They are going to recommend that I be allowed to be independent in my room for all of my activities in preparation for discharge on Friday.  This week we are going to continue to work on arm and hand strength by working on my quilt block, leg strength and flexibility, core strength, fine motor skills and lots more.  When I go home, I will have Rehab without Walls which will come to my house for a few months to do therapy and continue working on all of these things.

I'm sure everyone is tired of  hearing about the hospital so I can start writing  about other things.  I also plan on starting to write some of my like history in this blog.  I have a booklet with life history prompts and I plan on  using those prompts as my post title and then my entire post with center around that prompt.  Maybe one of these days I can just make my blog into a book with some minor editing.

Thursday, April 19, 2018

Progress Report

It's been a few days since I updated this because it's been just the same thing going  on every day here.  I've been going to PT and OT and getting a little bit stronger each day.  Today we added pool therapy.  Here is a break down of the things I couldn't do when I got out of the ICU but I can do now.  Some of  them are pretty small things, but are a big deal for me.  They are big steps toward independence even though they seems like such small things.  First of all, I can  roll over by myself and position myself in almost any sleeping  position.  I still have a little bit  of trouble if I need to position pillows under or between my legs but I can  get into a comfortable position on my own.

2nd, I can sit on the edge of the bed without falling over.  The last day that I was in ICU, the therapist had me try to sit on the edge of the  bed and  I  could not hold myself up.  I still have a little bit of  weakness in my trunk that shows up at various times, such as when  I am trying to stand, when I was in the  pool, and when  I am trying to bend over to pick  something  up from a sitting position and coming back up (like if I drop something)

3rd, I can transfer from my chair to the bed and vice versa independently.  I started doing  this  independently only 48 hours prior  to going to the ICU.  It's the quickest way for me to get in and out of bed.  This became possible only because my trunk became strong enough to hold myself upright.  I used a slide board to do this transfer.  The slide board created a bridge between  the chair and the bed or whatever else I am transferring to and I slide across the bridge.

The biggest thing is I can stand a little bit.  This allows me to do a stand pivot transfer to the toilet from my chair..  Using the transfer board on the toilet is really hard since it isn't an even surface and it is very slippery.  Now I can stand perpendicular to the toilet, pull my underwear down and swing my hips over to the toilet.  This gives me a huge amount of  freedom when I am out in public.  I won't have to carry my slide board with me when  I  go places or have to figure out  how to maneuver in a handicap stall that is just a little bit too small.

Overall, my strength is coming back too.  When the doctor does a neuro exam,  they assign a number to each  extremity for strength ranging from 0-5.  A score of 5 is a normal, strong extremity with no deficits.  It's been a long time since I have scored a 5 on a neuro exam.  A score of 0 means the extremity being examined is paralyzed, no spasms, no muscle tone, completely flaccid.  When my right leg is paralyzed from my MS flares, it never scores 0 because I always have spasticity and high muscle tone.  It was usually 1 initially because I had muscle tone and spasticity but no voluntary movement.  When I was in ICU last week with my full body paralysis, my neuro exam score was 0 on all 4 extremities.  Today, I scored 4- in my arms, 2 in my L leg and my Rt leg is a 1+.  These numbers are a huge improvement from my ICU time.

I have 1 more week in rehab and then I get to go home.  It seems like I have been here forever.  I am so ready to go home.

Sunday, April 15, 2018

Where did those muscles come from?

I have been in physical therapy for the years and years, mostly for my legs, especially my right leg.  It has been paralyzed multiple times.  With lots of PT and IVIG, I regain my ability to walk at least some.  I've had paralysis in every extremity in my body at some point over the last 10 years.  The majority of the exercise I get come from PT exercises and a recombant bike at a slow pace for 20-30 minutes most days.  These are not the kind of work outs that can make a person sore.  This is why I was very surprised when just a day of rehab made me very, very sore.  I started getting a little sore after my first 2 hours of PT/OT yesterday.  We did core work almost exclusively.  I took some Tylenol and felt better.  This morning though, I was very sore.  My back and obliques hurt a lot.  It's not my normal back pain.  My abs hurt too.  I guess that is what happens when those muscles are paralyzed for a few days, then have to be strengthened.  I feel like I did 500 sit ups.  I guess the soreness is worth it is because my trunk is stronger today than it was yesterday.  I can hold myself up for several minutes before I start to drift.  Do you know what the worst thing about being sore is?  Being in the hospital, I am limited to what the doctor orders for pain and they only ordered Tylenol every 8 hours.  Who gives Tylenol every 8 hours?  I need to get this changed as soon as I  see Dr. Latorre in the morning.

Friday, April 13, 2018

My ICU visit

I typed this up a few days ago but  it would not publish to save my life so  I just saved it but no such luck there either, so here it goes again, attempt number 2 to share with you my ICU experience.  It's one I hope  never to have to experience ever again.

On Sunday, while still in rehab, I woke up with my legs reparalyzed.  I let my nurse know and went back to sleep.  a few hours later, right during shift change of course, I woke up again and could not move from the waste down.  This was serious business and to this nurses brain meant lots of bad stuff was about to happen.  I tied not to freak out but insisted my day nurse call the doctor.  He didn't  hesitate to order an mri of my back and consulted with the attendings at the main hospital.  The rest of the day continued without incident until about 5pm when my hands started to feel weak.  I couldn't hold my phone or control my wheelchair.  This quickly progressed to full paralysis in my arms and within 10 minutes my torso lost movement.  By 6:30pm, I was on my way to the adult ICU in the main St. David's hospital.  I was paralyzed from the neck down with some mild decreased sensation to the soles of my feet and lots of tingling to my feet and hands.  I was trying to stay calm so my husband stayed calm to, but I will admit that I was terrified.

I received 2 blessings that day.  The first one was given to me by my husband when he got to the rehab center shortly after the  paralysis started to return.  I love Stan's blessings.  He always tells me how much the Lord loves me and how pleased he is with the choices I am making in my life.  Next he told me that the Lord was aware of the pain and suffering I was experiencing and though I would regain my ability to walk a gain, it would be in the Lord's time.  I  needed to  turn to my Heavenly Father in pray and turn to the scriptures.  I needed to be willing to ask for help from those around me, especially when so many people are always offering to help me.  My Heavenly Father encouraged me to accept all the help that everyone keeps offering, allowing others the blessings they receive from serving.  I will be ther 1st to admit that I am not very good about letting others help me.  I want to  do things myself, even after 10 years of dealing with this disease. I have been really working on that though.  After I starting having the ascending paralysis, Stan really wanted me to have another blessing but he felt he was too close to the  situation tell me what the Lord was saying rather than what he wanted to say so he asked Bishop Kriese to give it.  Bishop's blessing told me I would be healed in the Lord's time and  I  needed to put the work into getting better but the healing process had already started.  I needed to stay faithful, which I did all week.  While there was reassurance in these blessings, they didn't keep me from being totally scared.   I have learned that when blessings come in the Lord's time, that usually means that I will have a trial that I have to go through before the healing comes to pass.  I did a lot of praying to my Heavenly Father during those days in the ICU and learned more about the atonement of Jesus Christ.  Each time I go through one of these medical trials, I learn a little more about the  atonement of Jesus Christ.  I am so grateful I have a Savior who willingly suffered everything that I have to suffer in my life time so that I don't have to when I am overwhelmed and to the point I can't take it any more.

They had to watch my breathing very carefully because with my entire body already paralyzed, then next thing that would go would be my diaphragm, which would mean I would have to be put on a ventilator.  They did a test every 2 hours to see if my diaphragm was getting weak.  By the 4th or 5th test, I was at the bottom limit for diaphragm involvement.  I couldn't take a deep breath at all but I was maintaining my oxygen saturation at the lower limit of normal.  I got a little bit out of breath when I talked and I was sleepy a lot.  I did best when I slept.  My saturation was better then and I was just more comfortable so then nurses wanted me to sleep as much as possible, and so did Stan.

Monday afternoon I had to go get a spinal tap to test for a bunch of things.  I had had an MRI of my spine on Sunday afternoon when it was only my legs and hips involved that was normal, not even any "MS Lesions", new or old.  They had already decided 2 weeks ago that this could not be caused by MS because of the lack of spasticity and that continued to be true.  My body was completely flaccid.  Interestingly, even my neck, which for all intense and  purposes doesn't seem effected because I can still move it,  is no longer tight and spastic like it usually is.  That part is really nice actually.  I would like that fact that I have no spasticity if I could actually walk and move my body around.  "Body, you did not need to go from one extreme to the other, you really didn't."  I don't know why I just bothered trying to tell my body that little bit of advice.  I don't know about your body, but mine never listens to me.  I was never a rebellious teenager, but I have a rebellious 40+ body.  I wish I would have been a  rebellious teenager if this is the trade off 😁

Ok, now that we took that little detour, back on track.  After I got back  to the ICU from the spinal tap, they started another round of IVIG.  It's a good thing you can't really have too much IVIG because this was about to be my 3rd course of IVIG in less than a month, each one bigger than the  next as far as total dose.  Dose 1, my regular home dose is 90gm given over 2 days, dose 2 was 111gm, given over 3 days, then the dose in the ICU was 165gm over 3 days.  The very strange thing is that I tolerated the 2 hospital infusions better than I tolerate my home infusion every month.  My home nurse and I have been looking at a bunch of different variables between what they do in the hospital and what we do at home to figure out what the difference is and how we can replicate that at home. Within 30 minutes of the 1st IVIG completion, I started to be able to move my fingers a little bit.  I slowly regained use of my hands, arms and torso as the night progressed.  Nothing from my legs or hips though.  I'll take what I can get though.  I got another bag of IVIG each day for a total of 3 days and each day I got more movement back plus the areas that had already started to move got stronger.  It felt amazing to move again and I thanked God so much for the miracle that he gave me for it felt like a miracle to me.  I know the blessing told me that I would regain use of my body again, but when you are laying  in a bed and someone is having to feed you, roll you over, dress you, undress you, brush your hair, brush your teeth, rub the sleep from your eye, scratch  your nose, EVERYTHING, then when you start to move you hand even just a little bit, it is a miracle.

 My 1st dose of IVIG was 5 days ago as of the time of this writing, I am still seeing improvements every day. They are small improvements; slight increased movement to legs, or maybe a little more strength to my torso or a little more coordination to my fingers (the coordination in my hands sucks.  It's really hard to write)  I try not to compare my abilities now with what I could do when I was 1st admitted to rehab on 3/29, or remind myself that yesterday was my original discharge date.  Those kinds of things really discourage me and they are defeatist thinking.

I had my PT and OT evaluations today.  I definitely can't do the things I could when I came to rehab the 1st time, but the therapist are optimistic that everything will come back  quickly.  Their evaluation on top of the blessings I have received make me confident that I will walk again.  I just have to work hard, pray a lot, rely on my Heavenly Father and the Atonement of Jesus Christ and anything is possible.

 I'll have some therapy this weekend, so I'll probably post an update at the end of the weekend to summarize everything.  I hope everyone has a great weekend